Hannah Wilkinson, 13, left, has a genetic condition. She is pictured here with her mother, Tonya Wilkinson.(Photo: Family Photo)

Story Highlights

Hannah Wilkinson is 14-years-old, weighs 343 pounds and suffers from a genetic condition that will cause her to eat herself to death if left unmonitored.

Mother says the only hope for her daughter is a Pittsburgh facility that state Medicaid and insurance officials refuse to cover. They have denied treatment against the advice of doctors and medical specialists.

The case shows how little control families have when trapped between doctors who recommend the best course of treatment and insurance administrators who decide otherwise.

Hannah Wilkinson is 14 years old, weighs 343 pounds and will eat herself to death if left unmonitored.

The Gilbert girl suffers from a rare genetic condition that won't allow her brain to recognize that she is full no matter how much she eats. If deprived of food, she will become manipulative, aggressive and violent.

Despite padlocks on cabinets and the refrigerator in her home and near-constant supervision, Hannah finds ways to snatch food from cooking pots, the garbage and even from the family dog.

For more than eight months, Hannah's mother has been fighting with her insurance company and various state agencies to get her daughter into a special facility in Pittsburgh designed to treat children with Prader-Willi syndrome.

Despite recommendations from several doctors, referrals from specialists and support from advocacy groups, the Wilkinsons have yet to receive insurance authorization for Hannah to be admitted to the facility. Treatment in Pittsburgh has been denied at every step by UnitedHealthcare and state health administrators, including those with Arizona's Medicaid program.

"There are no programs for Hannah in the state of Arizona. They don't exist in the state," Tonya Wilkinson said in an interview this week. "That's the hardest part. I could lose my daughter if I don't get her to Pittsburgh. I could lose my daughter."

That's not just hyperbole from a distraught mom. According to doctors asked by the state to evaluate Hannah, and other specialists, there are no programs or services in the state adequate to treat Hannah. They say the girl is in crisis and could die without extensive intervention.

A doctor with Children's Rehabilitative Services, which oversees care for children with complex health-care needs enrolled in Arizona's Medicaid program, two weeks ago referred Hannah to the Pittsburgh facility. Another doctor made the same recommendation in 2013, he said.

Dr. Preethi Sivakumar said the Children's Institute of Piittsburgh is the "only institute to specialize in care of (Prader-Willi syndrome) patients with help in behavioral issues and weight management."

The case raises troubling questions about patients who require specialized care while enrolled in the state's Medicaid system — or with any other insurer. It shows how little control families have when trapped between doctors who recommend a course of treatment and insurance administrators who decide otherwise.

This week, The Republic, 12 News and azcentral.com are examining the cases of several people that highlight the larger financial problems in a fragmented health-care system.

A representative of Arizona Health Care Cost Containment System, the state's Medicaid program, said in e-mails Friday that the agency is not directly involved in Hannah's case. Decisions to authorize care are made by UnitedHealthcare, Monica Coury said.

Wilkinson contends that the agency divisions have been directly involved in the case, including Children's Rehabilitative Services, which has denied her request for inpatient treatment in Pittsburgh.

Officials with UnitedHealthcare did not address specific issues about the girl's treatment. UnitedHealthcare spokeswoman Cheryl Randolph said in a February statement that the company has provided a "personalized care approach" for Hannah.

Randolph provided a duplicate statement this week when asked about the apparent disconnect between the doctors' recommendations and the insurer's actions.

"We are confident the approach being taken by the care team is moving in a direction that promotes access to coordinated and comprehensive health care to meet the needs of the individual and her family," Randolph said in the statement.

In a follow-up e-mail, she added: "Based on our most recent meeting, (Hannah's) mother was in agreement with her treatment plan."

That is a fraction of the truth, according to Wilkinson, who works in medical billing.

Wilkinson said she has no choice but to follow the insurer's treatment recommendations while appealing its denials. She has appealed three times; last week, Hannah's case was heard by an administrative law judge.

She said state officials for months have been telling her that programs exist in Arizona to treat Hannah. However, Wilkinson said, state officials and insurance representatives have failed to present her with any formal treatment plan or recommend a facility in which to place Hannah.

Instead, they have provided her with a list of goals that include limiting Hannah's calories and getting Hannah to exercise. Tonya Wilkinson said officials have sent her bouncing from one specialist to another — endocrinologists, psychiatrists, pediatrician, home health nurses — with no apparent plan.

"They just say, 'Ms. Wilkinson, you have the services in front of you,' " she said.

Wilkinson turned to Call 12 for Action in February. Since then, she said Hannah's situation has worsened. Hannah has gained four pounds and her behavior is harder to control. She suffers from seizures that can put her in a kind of fugue state for hours at a time.

Hannah, who is in the eighth grade, has the cognitive ability of a 7-year-old, her mother said. Still, she understands her health is in jeopardy and that she needs special care. Because of her weight, she also suffers from sleep apnea and joint pain and has trouble walking.

A former Special Olympics athlete, Hannah now weighs too much to compete.

Wilkinson describes her daughter as kind and gentle, a child who cannot bear the thought that someone might be upset with her. But Hannah's need for food can send her into tantrums that start with cussing and sometimes lead to hitting and kicking.

Wilkinson, who weighs about 118 pounds, described trying to stop her 343-pound daughter from acting out as an extreme test of control.

Prader-Willi syndrome affects one in 10,000-25,000 people, according to the Genetic Disease Foundation. It can lead to deadly complications from obesity and from choking, as its victims sometimes cram food in their mouths as quickly as they can get it.

No matter how much they consume, victims of the condition will continue to feel as if they are starving.

The condition is caused by a defect in the 15th chromosome, the biological strands that hold a person's DNA. As a result, the hypothalamus — the part of the brain that regulates water and food, sleep, motor functions and hormones — doesn't work.

Hannah was not diagnosed until she was 6 years old, by which time she was overweight and showing signs of developmental disability.

"She had no metabolism, no muscle tone and she was starving 24/7," Wilkinson said.

What Hannah needs is a way to reset her system, Wilkinson said. For Hannah, that means a 600-calorie-per-day diet while under strict medical care.

The Children's Institute of Pittsburgh offers the only program in the country that combines strict weight control with around-the-clock medical care and behavioral therapy for Prader-Willi patients.

The institute will not disclose prices for the eight-week program, saying costs are based on individual circumstances. Wilkinson estimates the program could cost as much as $200,000.

The institute has moved Hannah's case to the front of the list based on the severity of her condition, Wilkinson said. She said the clinic, which usually has a yearlong wait, will take Hannah immediately upon approval.

Wilkinson said it was difficult to come to terms with the fact that her daughter needed in-patient care.

"I was never going to make that call," she said. "But it was either I send her to Pittsburgh or I lose her."

Doctors and specialists in Arizona and other states have come to the same conclusion.

"We couldn't make this recommendation if we didn't believe this was the only option to get Hannah stabilized and an opportunity for her to begin to lose the weight," said Evan Farrar, a crisis intervention counselor with the Prader-Willi Syndrome Association in Florida.

"We know of people, similar to Hannah's situation, where the eventual outcome was death. So, it's really important that the Arizona folks understand that this child is at risk of death."

Gilbert endocrinologist Kahlid Hassan, who has treated Hannah, said in a March letter that she needed medical care that cannot be provided in Arizona.

"I recommend that she gets help from Pittsburgh," he wrote.

Hassan described Wilkinson as Hannah's greatest advocate and said she "has proven to be indispensable in her medical management."

Wilkinson said she has focused so hard on her appeal that she has not given much thought to what will happen if she loses.

She said she has briefly considered trying to raise money privately. She said she hasn't made any public pleas for donations, although her sister did launch a website selling "Team Hannah" T-shirts.

Wilkinson said she considered moving out of state or trying to obtain new insurance. She said the Affordable Care Act seemed like it might offer a way out of her situation.

But when she signed up, based on her income and status as a single parent, the only insurance plans she qualified for under were through AHCCCS.

"I was back where I started," she said.

Even if the administrative law judge rules in her favor and upholds Wilkinson's appeal, there is no guarantee the state will send Hannah to Pittsburgh.

The judge only makes recommendations in cases; the judge does not dictate what the insurance company must do.